Who is Treating Your Heart?

For a good long life with congenital heart defect

A congenital heart defect can be treated well today. But the underlying disease remains. The transition from childhood to adulthood presents new challenges. Much more can be done at every stage of life to improve quality of life and life expectancy than many people think!

Newborns, Infants and Toddlers

Children

Teens and Young Adults

20+

40+

60+

Dear Reader,

Today, it is possible to grow old with a congenital heart defect. Before the 1970s, this was rather rare. In Germany, there are now an estimated 300,000 adults living with mild, moderate or severe congenital heart defects. And the number is rising. This makes it all the more important to provide optimal medical care for patients with congenital heart defects well into adulthood. For this, we need the appropriate scientific basis. We still know too little about aging with a congenital heart defect. Intensive research is being carried out by the Competence Network for Congenital Heart Defects.

In 2018, we launched OptAHF in cooperation with Barmer Health Insurance. It is one of the most comprehensive research projects ever on medical care for congenital heart defects (CHD) – covering the entire lifespan of patients. From June 2018 to April 2022, the Innovation Fund of the Joint Federal Committee, G-BA, funded the project.

We have compiled the OptAHF research results and other important information for you here. They show what matters in every phase of life with a congenital heart defect.

Sincerely,

Dr. med. Ulrike Bauer

Prof. Dr. Dr. med. Gerhard-Paul Diller

Matters of the Heart

What those responsible for the study say:

Matter of the Heart

„Consistent specialized care at every age must become a given for congenital heart defects. Many patients die from them far too early.“

Dr. med. Ulrike Bauer, Executive Director Competence Network for Congenital Heart Defects and National Registry for Congenital Heart Defects

Matter of the Heart

„It's important for everyone who treats these patients to talk to them more. In addition, communication between disciplines needs to be strengthened. It's also important to continue to promote interdisciplinary research.“

Professor Dr. Dr. med. Gerhard-Paul Diller, Senior Physician at the ACHD Center of Münster University Hospital (UKM)

Matter of the Heart

„The world's largest CHD study based on our data proves: Treatment, especially of adults with congenital heart defects, urgently needs to be improved in many areas.“

Dr. med. Ursula Marschall, Head of Medicine and Health Services Research at the Barmer Institute for Health Systems Research (bifg)

Heart Researcher Talk

OptAHF was the first to conduct comprehensive research on living with a congenital heart defect into old age. It is the largest care study ever conducted in this area. We asked those responsible for the research about the results.

OptAHF Heart Researcher Talk

Newborns, Infants and Toddlers

Children

Teens and Young Adults

20+

40+

60+

Newborns, Infants and Toddlers

A congenital heart defect is the most common organ malformation. One in 100 children is born with it. Just a few decades ago, this was a certain death sentence in many cases. Today, thanks to research and medical advances, even severe congenital heart defects have lost much of their threat. Most heart malformations are easily treatable and can be detected during pregnancy, or at the latest shortly after birth, when the infant's oxygen saturation is examined. Teams in obstetrics, pediatric cardiology and pediatric cardiac surgery can thus be well prepared to provide life-saving care for mother and child.

Preparation of a catheter intervention at Saarland University Hospital.

Saving Interventions

» More than 90 percent of heart corrections are successful. © Wolfram Scheible für Nationales Register

Infant during the follow-up examination.

Early Detection is Key

» Congenital heart defects are often discovered late. © Wolfram Scheible für Nationales Register

Early detection of critical congenital heart defects: A small measuring device with a light sensor on the foot measures the oxygen content in the blood.

One Procedure Helps

Only about one-third of severe congenital heart defects are detected during standard prenatal screening exams. These malformations can be better detected by fetal echocardiography, a high-resolution ultrasound scan performed mid-pregnancy. Pulse oximetry screening immediately after birth, which has been funded by the health insurance system since 2017, reduces the dangerous gap in early detection by 15 percent. On behalf of the G-BA, researchers at the Competence Network are currently determining how early detection has developed since then.

» Evaluation of Pulse Oximetry Screening

Matter of the Heart

„Especially in the case of moderate and severe heart defects, prenatal diagnosis is of enormous importance for the health of the child and for planning corrective surgery.“

Professor Dr. med. Hashim Abdul-Khaliq, Director of pediatric cardiology at Saarland University Hospital.

Gaps in Prenatal Diagnostics - a Burden for Affected Parents

"Did you know about this before?" This is a question that parents of children with congenital heart defects are often asked. Here, a mother writes about how difficult it is to deal with this question and finds her very own answer.

» To the experience report at BVHK

Survey

How well do you feel informed about your child's heart defect and possible subsequent risks?

Dr. Ulrike Bauer in the biobank of the National Registry for Congenital Heart Defects.

Dr. Bauer's Checklist for
Just Before and Just After Birth

It is essential to make use of the early detection procedure via ultrasound during pregnancy: The earlier a congenital heart defect is detected, the greater the chance of living well with it.
After birth, pulse oximetry screening is important for early detection.
If you have your own congenital heart defect, get early advice from a specialized ACHD center.
If you suspect a congenital heart defect even before birth: seek advice from a pediatric cardiology center.
You are not alone! You can also find helpful support in your area at the BVHK.

Children

People often underestimate what is possible with a congenital heart defect. Nevertheless, every family with a CHD child has to adjust in a completely different way so that no one misses out. Sometimes further heart surgeries, hospital and rehab stays are necessary. This can thoroughly throw many a good plan out of kilt. Numerous parents' initiatives offer valuable mutual support. And, of course, regular visits to the pediatric cardiologist remain important.

Jonas

In 2016, we welcomed Jonas as the 50,000th member of the National Registry for Congenital Heart Defects. In the meantime, Jonas has long since become a schoolchild. The story his parents told us back then still touches us.

» Jonas Does a Great Deal for Research

Children at the school enrollment ceremony.

I Can Do It!

» From elementary school to high school graduation © Nationales Register | fotolia.com | contrastwerkstatt

Matter of the Heart

„Children with congenital heart defects usually do well in school. However, microcephaly can present mental and cognitive challenges and affect academic development. It is important to diagnose early so that children can be specifically strengthened with their individual talents.“

PD Dr. med. Constanze Pfitzer, Physician at the German Heart Center of the Charité (DHZC)

A baby's head circumference provides information about the possible presence of microcephaly.

Microcephaly – a Risk?

» Many children with congenital heart defects need targeted support © iStockphoto.com | thodonal

Strong network partners: parent initiatives and patient associations.

Together We are Here For You!

The Competence Network for Congenital Heart Defects and the National Registry for Congenital Heart Defects work closely with the BVHK and other parent initiatives and patient associations.

» Elterninitiativen und Patientenverbände

Mitigate and Prevent Disadvantages

Good advice for parents from parents: This is provided by the Bundesverband Herzkranke Kinder e. V. (BVHK), which also advises on socio-legal issues.

» To the BVHK website

Matter of the Heart

„Vascular constriction, obesity, dyslipidemia, arterial hypertension as well as diabetes become dangerous especially for patients with congenital heart defects. Prevention must begin in early childhood.“

Prof. Dr. med. Christian Apitz, Head of Pediatric Cardiology at Ulm University Hospital

Children with congentinal heart defects need more exercise.

Children with Congenital Heart Defects Sit too Much

» WHO recommendations are barely followed. © iStockphoto.com | FatCamera

Survey

Does your child get enough exercise?

Dr. Bauer's Checklist for Heart Kids:

You don't have to be overprotective of children with congenital heart defects! Sports and exercise that they like and dare to practice are entirely beneficial, even for children with severe congenital heart defects.
Three handfuls of vegetables, two handfuls of fruit* daily: Appoint your heart child as " head chef ", talk about valuable ingredients and discover the fun of preparing and enjoying them together.
For prevention: Have your child vaccinated according to the STIKO recommendations!
Every heart defect is individual. This also applies to the talents and abilities of children with congenital heart defects. Talk to your pediatric cardiologist about possible challenges and solutions.
Helpful support, also in socio-legal questions, is offered by the BVHK.

*WHO Recommendation

Teens and Young Adults

First love, first graduation, first own apartment and a thousand new ideas? Exciting times! A congenital heart defect should by no means stand in the way of your own dreams for the future and their realization. It won’t always be easy, but don't worry, it can be done! The crucial thing is to know that you have the best possible medical care. The ACHD specialists are now responsible for your regular heart check.

OptAHF

Gap in Follow-Up Care

Does the transition from pediatric cardiology to ACHD specialist work? We wanted to find out more. The result: Half of adults with congenital heart defects do not receive appropriate care.

» Gap in Follow-Up Care

All is Well?

How are you doing in terms of your health? Perfectly! That's the answer most young people would give, according to a survey by the registry, regardless of how severe their own congenital heart defect is. That's the way it should be. And that's the way it should stay.

» Patient Survey: All is Well?

Congenital heart defects belong in specialist hands until old age.

From 18 Please See the ACHD Specialist!

» What can happen to me? Quite a lot! © iStockphoto.com | mgstudyo

Matter of the Heart

„Cardiac arrhythmias and pulmonary hypertension are diseases with a high-risk potential also for adolescents and young adults with congenital heart defects and therefore cases for ACHD specialists.“

Prof. Dr. Dr. med. Gerhard-Paul Diller, Senior Physician at the ACHD Center of Münster University Hospital (UKM)

For Heart, Ears and Mind

With "Fragments of Living", Sabrina was the first ACHD blogger in Germany. Today, her Instagram account has 20,000 followers. And it's also worth listening in: together with her friend Nia Lan and guests, Sabrina has spent a year philosophizing about interesting life questions in a podcast format. We're looking forward to hearing more!

» Listen to the podcast on Spotify

Survey

Which doctor do you go to for problems with your heart defect?

Dr. Bauer's Checklist for Now!

Even if you feel you are in top shape: After 18, you should see an ACHD specialist! Regular check-ups are important.
Heart rhythm and lung pressure without findings? Please have them checked on a regular basis!
Be sure to get advice on contraception! This also applies to men!
Be sure to check your vaccination status and, if necessary, refresh it according to the recommendations of the STIKO!
Be kind to yourself and allow yourself to feel good! This is a right of life. In case of prolonged psychological problems, please seek counseling and get help!

20plus

Marc enjoys swimming and finds it easier to live with his heart defect as an adult. Helena is studying mechanical engineering and dances competitively. And Raúl has become an educator and found the love of his life. Works! But in exceptional situations, different rules apply to congenital heart defects. For example, when it comes to contraception and pregnancy.

A Summer Party for Me

» When Helena had her first heart surgery, her heart was the size of a walnut. © Nationales Register | privat

Just Look, Don't Touch!

» Two days after his birth, Raúl's skin turned blue. He could make his first explorations of the world only with his eyes. © Nationales Register | privat

Just Ask Me!

» Swimming is Marc's favorite sport. Today, he deals with his long scar quite openly. Here he tells his story. © Wolfram Scheible für Nationales Register

OptAHF

Doctor examines thyroid gland by ultrasound.

Pills Against Cardiac Arrhythmias?

Especially in CHD, this should be carefully evaluated. Amiodarone medications have very unfavorable side effects.

» Schilddrüsenerkrankung: Das Amiodaron-Risiko

OptAHF

In case of congenital heart defects, vaccinations against influenza and viral pneumonia are vital protection.

The Risk Factor Viral Pneumonia

» Flu and pneumococcal vaccination are lifesavers. © iStockphoto.com | merteren

Matter of the Heart

„Viral pneumonia can quickly become life-threatening for people with moderate to severe congenital heart defects.“

Prof. Dr. med. Helmut Baumgartner, Director of the Clinic for Cardiology III: Congenital Heart Defects (ACHD) and Valve Diseases at Münster University Hospital

OptAHF

Mothers with congenital heart defects: with specialized care, the risks of pregnancy are lower than previously thought.

Desire to have a child despite CHD?

When women have a congenital heart defect: Is the desire to have children then even fulfillable? That's what science says.

» Desire to Have Children Despite a CHD?

Matter of the Heart

„Most women who have a congenital heart defect can safely survive pregnancy and also birth if they receive close care from ACHD specialists.“

Prof. Dr. med. Astrid Lammers, Specialist in Pediatric Cardiology at the EMAH Center of Münster University Hospital (UKM)

Everything Clear with Contraception?

Probably not entirely, as this study has shown.

» Lack of Counseling

Survey

How well do you feel advised about love life, contraception and pregnancy?

Dr. Bauer's Checklist for 20plus

Please stay tuned: Regular check-ups with an ACHD specialist are still essential! This is especially true if you are taking anticoagulants or antiarrhythmics!
Please seek advice from an ACHD cardiologist in matters of love life, contraception and pregnancy! This also applies for men!
Please check your vaccination status and, if necessary, refresh your vaccinations according to the STIKO-recommendations!
Things haven't been going well for a while? If you have persistent mental problems, you should definitely seek advice and help!
Your body deserves these extras: plenty of daily exercise in the fresh air and a balanced diet!

40plus

Finally happy at work and with your family? At least that's what the statistics say. So let's start the second half of life in a good mood! Sure: partying all weekend, showing everything on the sports field, pulling all-nighters – the body protests more vehemently now. But it's worth listening to it. After all, cardiovascular diseases generally increase from the age of 40. This also applies to secondary diseases caused by congenital heart defects. Cardiac arrhythmias, pulmonary hypertension or high blood pressure should urgently be detected and treated at an early stage. In addition, there are the risks of other diseases typical of old age. These have quite different effects in patients with congenital heart defects. Your doctor should also be familiar with these.

OptAHF

Readiness for a lifetime of specialized preventive care is a critical survival factor in CHD.

Well Cared for Throughout Life

Matter of the Heart

„For a long, good life with congenital heart defects, specialized care is critical. And care should be well matched to those affected. To achieve this, all physicians need to work together in a more networked way.“

PD Dr. med. Corinna Lebherz, Senior Physician at the Clinic for Cardiology, Angiology and Internal Intensive Care Medicine at RWTH Aachen University Hospital.

Survey

If you had to choose, what is most important to you?

OptAHF

Age, gender, and concomitant diseases are decisive factors for the course of endocarditis.

The Endocarditis Trap

Matter of the Heart

„The risk of bacterial inflammation of the inner lining of the heart is usually well known to CHD patients and their physicians. Most CHD patients are treated for endocarditis at the ACHD Center. This saves many of them.“

Dr. med. Maarja Maser, Specialist in cardiology at the ACHD Center at Münster University Hospital (UKM)

Is your sex life not going well? You are not alone. For erectile dysfunction, consulting with an ACHD specialist can help.

And in bed? Is it only mediocre?

Dr. Bauer's Checklist for 40plus

Regular check-ups with an ACHD specialist remain essential for survival. This is especially true when taking anticoagulants or preparations against cardiac arrhythmias!
Before surgical interventions (e.g. gall bladder surgery), but also during dental treatment: Ask specifically about endocarditis prophylaxis!
Please check your vaccination status and, if necessary, refresh your vaccinations in accordance with the STIKO recommendations
In the event of prolonged mental downs: Please be sure to seek counseling and assistance!
Always good: Give your body that every day extra bit of exercise that you enjoy and feel good about, preferably in the fresh air, as well as a balanced nutrition!

60plus

60plus with CHD? This is increasingly the norm today. The number of people over 60 with congenital heart defects is steadily growing. It is true that inpatient stays are also becoming more frequent. The number of procedures and also the number of life-threatening cardiac events is rising significantly. But those who regularly visit an ACHD specialist can do a lot to ensure a largely carefree life into old age.

He Listened to my Heartbeat and Became Suspicious.

» Barbara's aortic coarctation was discovered late in life. Today, the dog lover celebrates her birthday twice a year. © Nationales Register | privat

OptAHF

The intake of so-called Non-Vitamin K oral anticoagulants (NOACs) must be closely monitored.

Anticoagulants Under Long-Term Observation

One in eight patients with congenital heart defects is reliant on anticoagulants. Caution is advised when taking so-called DOACs.

» Anticoagulants Under Long-Term Observation

OptAHF

Heart palpitations at rest? Cardiac arrhythmias in CHD are a case for the ACHD specialist

Heart Out of Sync?

Matter of the Heart

„Supraventricular tachycardia is one of the most common late complications in adults with congenital heart defects. The risk of this increases to about 50 percent by age 65. Patients with specialized care have an advantage.“

Dr. med. Alicia Fischer, Specialist in Internal Medicine & Cardiology, Emergency Medicine at the ACHD Center of Münster University Hospital.

OptAHF

Readiness for a lifetime of specialized preventive care is a critical survival factor in ACHD.

Well Cared for Throughout Life

Survey

If you had to choose, what is most important to you?

Dr. Bauer's Checklist for 60plus

Do you regularly take various medications? Please talk to your ACHD specialist about all preparations!

Do you suffer from palpitations or racing heart? Please see your ACHD specialist quickly! If symptoms persist with dizzy spells, shortness of breath and anxiety or disturbances of consciousness and sensation: Call the emergency doctor immediately!
Please check your vaccination status and, if necessary, refresh your vaccinations in accordance with the STIKO-recommendations!
Do you feel emotionally down? Do not hesitate to seek counseling and help!
Continue to do your body a lot of good: Give it plenty of daily exercise in the fresh air and a balanced diet!
Stay true to your regular routine ACHD check-up!
Are you taking anticoagulants? Do you know exactly about the effect and possible complications?
Do you measure your INR- value yourself if you take vitamin-K antagonists such as Marcumar or Falithrom? MTBASA also offers online training.

We Continue Researching

Jonas, Sabrina, Marc, Helena, Raúl, Barbara and all the others should have a beautiful and long life. Thanks to medical progress, this is already possible in many cases.

Dr. med. Ulrike Bauer, MD, KNAHF, Prof. Dr. Dr. med. Gerhard-Paul Diller, UKM, and Dr. med. Ursula Marschall, bifg, are responsible for OptAHF, the largest study to date on medical care for congenital heart defects.

Of course, there are still many unanswered questions. But some of them have now been scientifically clarified. This already helps the treating specialists to better assess the risks and keep them as low as possible.

The better everyone knows about their own heart defect and the more attentive everyone is to regular check-ups with their specialist, the greater the chance of growing old well with their congenital heart defect.

Our research continues. All participants in the National Register for Congenital Heart Defects help us to do this. Only their data, samples and donations make our research possible.

We say thank you to all heart researchers and to kinderherzen.
Together we make survival worth living!